From the 1st annual XMRV conference

PS: I would understand grand slam in the bridge sense of winning every trick, therefore ticking every box, and, one would hope, completing a major conclusion from a collection of component conclusions. The components all now awaiting publication, presumably, and perhaps to be laid down in one go or maybe one by one...over the next few weeks and months, hopefully...but of course, the stronger these pillars are, the better...

Beautiful write up Mark. I'd like to kick the elephant in the room if you all don't mind. If they found XMRV in bronchial secretions does that mean that equipment to test these secretions is also contaminated? And what about reports that it has been and is being found in urine? Do we then conclude that perhaps the doctors themselves are the source of contamination. (big grins) Or is the question of contamination, which seems to come up only in relation to ME/CFS samples
just a smoke screen for the press? The longer this debate goes on the longer the delay in the much needed science of causation. (head shake)

I think it's in everyone's best interest that the question of contamination be thoroughly examined and put to rest. My scientist friends tell me that contamination can crop up in all kinds of weird ways that you'd never expect, and that it is not unreasonable to go to great lengths to rule it out.

Beautiful write up Mark. I'd like to kick the elephant in the room if you all don't mind. If they found XMRV in bronchial secretions does that mean that equipment to test these secretions is also contaminated? And what about reports that it has been and is being found in urine? Do we then conclude that perhaps the doctors themselves are the source of contamination. (big grins) Or is the question of contamination, which seems to come up only in relation to ME/CFS samples
just a smoke screen for the press? The longer this debate goes on the longer the delay in the much needed science of causation. (head shake)

Click to expand...

Thanks George, yes at times it seems kind of surreal that we are still talking about all this, the only evidence of contamination seems to lie in other people's results rather than the researchers' own.

Yes I like your contamination theory...maybe we'll hear that next...it's the doctors that were treating them, they're where the contamination is coming from...actually iatrogenic has come back into fashion a bit in a wider sense, I would say...oh and by the way it's rarely mentioned but fairly sure WPI have asserted that the blood for matched controls and patients in Lombardi was drawn in each case from the same clinic under the same conditions, can anyone remember the reference for that info?

You are clearly already of the opinion that your option (a) is unlikely, but let me emphasize this point: if ME or CFS patients are particularly vulnerable to this kind of virus, and we know it is in the population at some level, it could be predicted that at some time most to all CFS patients would be infected. This makes it unlikely that contamination explains it, as they would probably already have the virus (if we presume that XMRV has been around for many decades), at least in some percentage. So believing in (a) as a possibility should strongly imply (b) as a more likely scenario. No matter how you look at this problem, option (b) keeps coming up the winner.

However, just to play Devils Advocate: lets presume (a) is correct. Lets further accept that this means that some CFS patients do have the virus. Did it ever occur to anyone that the source of the contamination is CFS patient blood? In other words, there is contamination distorting the results, but some of the samples are contaminated because other samples already have the virus. If this is true, some of us have XMRV, but the prevalence is not high enough to implicate causation - its a passenger (and we are again back to option (b)).

Just to be clear, I am still backing your hypothesis (b), but I think somebody should be asking these questions.

(a) The XMRV detected is actually coming from something used by the +ve studies in their blood collection and storage process, AND therefore the blood of those PC + CFS patients is a specially suitable environment for contaminant XMRV retrovirus to thrive in, in vitro at least, AND therefore the PC and CFS patients are very probably disproportionately immune-suppressed,
...or...
(b) The XMRV detected is coming from the patients blood, AND it seems then likely that this is associated with immune-suppression, likely also to play a key causal role, but possibly purely a passenger.

I think it's in everyone's best interest that the question of contamination be thoroughly examined and put to rest. My scientist friends tell me that contamination can crop up in all kinds of weird ways that you'd never expect, and that it is not unreasonable to go to great lengths to rule it out.

Click to expand...

This is true, but from what I understand the contamination issue is just about ruled out. The calibre of researchers getting the same basic results (Mikovits, Lombardi, Lo, Alter, etc) rarely make the kinds of basic (and career killing) mistakes necessary to allow contamination.

Far as I am concerned the onus is now on those advocating contamination to prove it.

Assuming we can rule out contamination etc, I don't really buy the "purely a passenger" hypothesis. If XMRV/HGRV is detected at rates of only 10% in immune-compromised individuals, what do rates of 67-87% in CFS patients indicate? A virtually non-functioning immune system like the "bubble boy" is unlikely, so perhaps it is pathogenic to a significant degree. Although I still cannot rule out the possibility that CFS patients have a very specific immune deficiency, one which only HGRVs can take advantage of in such a universal fashion that it shows up in the vast majority of patients despite imprecise testing and dubious CFS criteria. Even if this retrovirus is just a passenger, but one with such a high prevalence, this would be a major red flag and a clue for where the research should focus on next.

This is true, but from what I understand the contamination issue is just about ruled out. The calibre of researchers getting the same basic results (Mikovits, Lombardi, Lo, Alter, etc) rarely make the kinds of basic (and career killing) mistakes necessary to allow contamination.

Far as I am concerned the onus is now on those advocating contamination to prove it.

Click to expand...

Or to move past it. It really seems silly to me that we are still having that particular conversation. I just see it as another delay tactic rather than a bonafide argument.

A grand slam is a baseball term. In baseball there are 3 bases (or plates) and home plate.

The batter stands at home plate. The pitcher throws the ball and the batter tries to hit the ball. If he hits the ball he runs towards first base. The goal of this exercise is to get around all 3 bases in order (first, second, third) and then to home base. When the batter "safely" runs across home plate, he scores a run. If a batter hits the ball and successfully crosses home plate before the next batter is up to bat, he has hit a home run. If the batter's teammates have already hit the ball and three of them are on first, second and third base respectively and the batter bats a "home run", it is called a grand slam! If you were counting, yes, it means one "at bat" created four more runs for the team and it doesn't get any better than that!!!

The object of the game is to get more runs than the opposing team. With various rules and nuances, that's the game in a nutshell. (Dad, I hope I did you proud with that explanation! )

I understand that many of you are not from the USA. Welcome to what we call "the great American pastime." If Villagelife is from the USA, I assume it was a baseball reference, if not I guess it was a bridge reference.

I think's very much a delay tactic by the more crafty as well as a nice way out for those taking the 'easy' way out in explaining conflicting results rather than digging deeper into the matter.

Click to expand...

Very true! Everybody gets to "save face", no one looks silly in the media because it seems the media is caught up in this whole argument as well. I just can't for the life of me figure out why the media doesn't look past the smoke and mirrors.

The first group to mention contamination and to keep mentioning it are the authors of the first negative ('quick & dirty') study (scuse pun) in the UK.
This group includes the psychiatrists who have long been the bane of UK ME patients and Myra McClure (who may inadvertently have got dragged in, at least initially).

Wherever reports from this particular group crop up in the press and medical journals there is an emphasis on the negative studies (including the ones due to come out, but no mention of positive ones in pipeline even when known about) and of course possible contamination - at every possible opportunity.

Don't forget, these psychiatrists are experts in understanding human psychology and its manipulation and currently many of them in the UK are in positions of strong influence as they sit on committees of several different and highly respected professional, working group and regulatory bodies (including MRC, Royal College of Physicians/GP's/Psychiatrists .. fill the gap).

Good post Mark . With all the underlying differences so apparent from the conference how long do we think it will be before you can go to your local family doctor and get medicine ? I reckon 5 to 10 years if I had to put money on it. I think our best bet is our 'own' research , like you , Mark (and some others) have clearly done. Also inklings from WPI , and they can only be that or they will be shot down in flames by these others who have all the time in the world it seems.

Good post Mark . With all the underlying differences so apparent from the conference how long do we think it will be before you can go to your local family doctor and get medicine ? I reckon 5 to 10 years if I had to put money on it. I think our best bet is our 'own' research , like you , Mark (and some others) have clearly done. Also inklings from WPI , and they can only be that or they will be shot down in flames by these others who have all the time in the world it seems.

Click to expand...

There is one thing bothering me in this frenzy. It is the fact that we are talking about possible treatments (Pete, you are mentioning 5 to 10 years). The problem is that for all of us who are severely sick and house/bedbound, this moment will not come soon enough, but worse, it might not come at all. What if it turns out that XMRV is not the cause of CFS? What if our hopes were all up and then we have to go back to our previous expectations ? This will be devastating for many of us who were seeing ourselves at the dawn of a new life. This is going to hurt, big times! I'm worried.If this happens, how many of us won't be able to go on after this?...

I suspect that only people who are XMRV+ are contaminated with XMRV - potentially ruining perfectly good paper(s) unless steps are taken to clean up the data and remove the effects of this contamination - AFAIK this would explain all the papers:tongue:

There is one thing bothering me in this frenzy. It is the fact that we are talking about possible treatments (Pete, you are mentioning 5 to 10 years). The problem is that for all of us who are severely sick and house/bedbound, this moment will not come soon enough, but worse, it might not come at all. What if it turns out that XMRV is not the cause of CFS? What if our hopes were all up and then we have to go back to our previous expectations ? This will be devastating for many of us who were seeing ourselves at the dawn of a new life. This is going to hurt, big times! I'm worried.If this happens, how many of us won't be able to go on after this?...

Click to expand...

I worry about that too.. i myself can wait as i see CFS/ME as already stuffing up my life inrepairably and even if fixed.... well my life is so stuffed now in ways i dont know if can be fixed.
I personally think we could end up with a few suicides... if the XMRV stuff dont pan out or even if it does.. some of the ones who find out they are XMRV negative probably will be at risk (i do currently have some ideas which may help in regard to that last thing and plan if i can get well enough to do so..put something in action to help there).

There is one thing bothering me in this frenzy. It is the fact that we are talking about possible treatments (Pete, you are mentioning 5 to 10 years). The problem is that for all of us who are severely sick and house/bedbound, this moment will not come soon enough, but worse, it might not come at all. What if it turns out that XMRV is not the cause of CFS? What if our hopes were all up and then we have to go back to our previous expectations ? This will be devastating for many of us who were seeing ourselves at the dawn of a new life. This is going to hurt, big times! I'm worried.If this happens, how many of us won't be able to go on after this?...

Click to expand...

If it turned out that XMRV was not a causative factor, it is *still* a big deal, because life with a retrovirus is no fun! PWME/CFS"s systems are already pounded with multiple infectious agents, including herpes family viruses (EBV, HHV, VZV, CMV) which also never go away. In people with healthy immune systems these things can lie dormant with little to no effect. For us, causative or not, a retrovirus would be a major player in why our immune systems cannot keep up with the things healthy people live with asymptomatically.

Once all the science gets on the bus and admits this retrovirus is in the population in a major way, and we can start treating it, it is, in my opinion, highly likely that we will all feel MUCH BETTER whether it was the cause of our illness, or just a passenger. Even if a bad road trip was riddled with bad weather, flat tires, road construction, an overheated radiator and static on the radio, getting rid of the passenger who farts continuously, thinks it's funny to cover your eyes while you're driving, and won't stop whingeing, definitely improves the quality of the journey, I'd say.

Your point about the long wait for treatment, on the other hand--the best we can do is recognise that technology and science are moving ever faster these days, and I remain hopeful that what used to take 10 years in medical science, may easily take 3-5 now (still, I know, a scary hell for those of us on the couch with no income.)

We really need the politics to calm down so we can streamline the process of R&D. I cannot accept that we have to live with this forever. The best thing about XMRV is the attention now being paid. Attention must be paid!

I think's very much a delay tactic by the more crafty as well as a nice way out for those taking the 'easy' way out in explaining conflicting results rather than digging deeper into the matter.

Click to expand...

Well it's quite late in Belgium already and I have a terrible day, but nevertheless I want to ask you something about the delay tactic? Does anyone of you think that the discovery of xmrv, e new retrovirus, linked to MECFS is a well kept secret so far from the public, because aknowledging this fact will unleash fear and confusion like with HIV?

Even if a bad road trip was riddled with bad weather, flat tires, road construction, an overheated radiator and static on the radio, getting rid of the passenger who farts continuously, thinks it's funny to cover your eyes while your driving, and won't stop whingeing, definitely improves the quality of the journey, I'd say.